Development
and Rationale of Our Privacy Policy
From
the outset of this project, we have been cognizant that the images in
this archive and the ideas expressed by eugenicists are potentially offensive.
Eugenics cast a negative light on every racial, ethnic, and disabled group.
Many of the things that eugenicists did and said were bigoted and hurtful.
Therefore,
the conceptualization and development of this World Wide Web (WWW) site
was guided by an Editorial Advisory Panel (EAP) composed of historians,
sociologists, scientists, and representatives of minority and disabled
communities. This panel discussed for 30 hours how the materials should
be presented and what measures should be taken to protect the privacy
of recognizable individuals, families, and pedigrees. We believe the privacy
policy that emerged from panel deliberation provides a reasonable balance
between historical "right-to-know" and personal privacy protection.
Although
they vary from state to state, privacy laws generally hold that 1) privacy
rights cease upon death of the individual and 2) a person has no legitimate
privacy claims against items already in the public domain. Thus, the vast
majority of items in the Archive are technically exempt from privacy
claims, since they deal with deceased persons or are taken from published
works. However, we decided to consider the relevant privacy issues according
to more stringent ethical standards. We acknowledged that the mere fact
that an image is in the public domain does not diminish the dignitary
harm it may inflict. We also acknowledged that, in a genetic sense, personal
privacy does extend beyond death to surviving relatives. In addition,
we considered the risks of group stigmatization that could potentially
result from identifying disabled people using out-of-date or offensive
terms.
While
recognizing these potential risks, we ultimately concluded that the minimal
personal risks to the individuals portrayed in the Archive, their
surviving relatives, and the groups with which they may be associated
are substantially outweighed by the potential societal benefits of making
these materials widely available for study. These benefits include the
opportunity to teach students and the general public about a part of American
history that is not generally known and the opportunity to sensitize individuals
to the present-day implications of the eugenics movement.
Thus,
after serious deliberation, we adopted a single key provision to provide
limit the likelihood that individuals can be identified: Names and
place identifiers are removed from all personal photographs and pedigrees
in the Archive.
Assuming
that a very few of the individuals portrayed in the Archive may
still be alive, it is unlikely that they would come into contact with
Archive. In the unlikely case that living relatives come
in contact with the Archive and can identify a portrayed individual,
any harm would be essentially derivative and intangible. Likewise, we
believe it unlikely that third parties would be able to identify individuals
so far removed in time, without name or place identifiers.
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